I am not a very religious person, but Lily has shown me lots
about faith and spirituality. Today the Man upstairs has smiled on us and delivered
a much needed break to our little family. Today I have felt choked with
emotions and tears. Not tears of sadness, but tears of joy and happiness! This
morning when I went to visit Miss Lily, she wasn’t there…she had moved…all the
way to Bay 2!! I can’t remember the last time I felt so very happy, my mind has
been buzzing all day with pride, awe and amazement for our Super Baby Lily. I think
she saved this surprise for Grandpa Sharp’s 60th birthday…I always
had a feeling she was going to arrive today…
The last week has been fast moving, with Lily working her way
to up to full time high flow…to the doctors deciding to give her a go on low
flow…to staying on low flow yesterday and loving it…to still being on her low
flow over 24 hours later. Low flow means that there is no pressure keeping her
lungs up, she is doing it all on her own. She is also being given a tiny amount
of oxygen….0.1litres. (This is a very small %, compared to what she was on
earlier this week) It is the closest to breathing all on her own Lily has ever
been. She seems very happy with this arrangement, being the most settled and
least wriggly I have ever seen her, she spent all morning napping today as she practiced
her big girl breathing.
Lily has lots of various people poke and prod her regularly,
but this week some new people met Lily from the developmental care team. A
physio put Lily through her paces to check things like her head control,
sitting and standing, and her eyes movements etc. At this stage she is at the
expected level. This is something I will continue to watch with keen interest
as with VCFS and being premmie, developmental delays are very common.
At this stage they are keeping her Bay 9 position open, just
in case she gets tired and needs to go back to high flow…but I have all my
fingers and toes crossed, that she’ll be ok, and power on through. She is 16
weeks old tomorrow, 1 week corrected and 3.612kg. I think that with all her
growing, she is fixing her lungs and making them big and strong.
Mr T and I are very positive people, but have been struggling
a little lately with the idea of Lily who is now full term still being in
hospital. She would have been home if she had arrived on her due date by now,
so it is difficult to spend so much time away from her. Especially as she is so
alert when awake, and loves her cuddles with Mummy and Daddy. So today was just
what we needed…a huge leap towards being together as a family in our own little
home.
Time for some more happy tears while I get tea ready…and I think
tonight a celebratory glass of champers with dinner to celebrate Lily.
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